Maternal instinct is a thing. 

When our son Jace was just 3 years old, he was developing hives for no reason. It was happening about 3 times a week, sometimes more. When I contacted our local pediatrician here in Erie, Pennsylvania, she told me to “just give Jace Benadryl, and eventually the hives would go away”. As a mother, this response did not sit well with me. I wanted to know what was causing the hives, and why was this happening. That’s when we decided to reach out to an allergist at the Cleveland Clinic. On April 30th, 2021, our lives forever changed.

That day, we went to see Dr. Alton Melton, a pediatric allergist at the Cleveland Clinic Main Campus. His nurse had called us back, taken Jace’s height and weight, and then brought us back into a room. Before Dr. Melton had come in, we had the pleasure of meeting Dr. Sara Ghannam, the Allergy and Immunology Fellow working with Dr. Melton at that time. She came in and asked my husband and me a series of questions about Jace’s diet, change to detergents, outside allergies, and anything that had to do with what could be causing Jace to have these hives. She took all the time in the world with us, not leaving a stone unturned. Before she left the room to get Dr. Melton, she had asked us if we had ever had the spots on Jace’s neck addressed, spots he had since he was an infant, spots we were told were birthmarks and that would eventually fade over time. Cafe Au Lait spots, a term we had never heard before that day. April 30th, 2021 started Jace’s Neurofibromatosis journey. 

In July of 2021, Jace had genetic testing done to officially confirm his Neurofibromatosis Type 1 diagnosis. Fast forward to April of 2023, Jace is a well-established patient at the Cleveland Clinic and is closely monitored by a team of 26 amazing doctors, everything from Oncologists to Ophthalmologists to Neurologists. His team of doctors mean the world to us and we are so grateful for each one of them who have walked beside us in this journey so far. 

The hardest part about the NF journey is the uncertainty that comes along with it, knowing that Jace’s life can be turned upside down without warning. The phrase “it takes a village” conveys the message that it takes many people to provide a safe, healthy environment for children. In our case, our village consists of many doctors, our families, our friends, and so many people we have met through NF Northeast. 

We did our first NF walk in Buffalo, NY 2 years ago, where we got to meet so many amazing people and families. We got to hear others' stories about how NF affects them and their loved ones. But one of the biggest blessings that came out of meeting our NF Northeast family was when my husband and I were asked to travel to Washington, DC to advocate for Neurofibromatosis this past February. That was an experience that I will hold close to my heart for a lifetime. We met people from all over the country, all there for the same reason, to advocate for loved ones with NF. 

Above I wrote that maternal instinct is a thing. I say this because when our doctors in Erie told us that Jace’s hives would go away on their own and just give him Benadryl, as a mom, that didn’t sit right with me. I wanted to get to the bottom of it. The hives ended up having nothing to do with his NF journey and after a complete and thorough exam from the allergist in Cleveland, he was put on an allergy medication for a short period, and this resolved the issue. Always listen to what your heart and your gut tell you. We have to advocate for our children. It’s our job as their parents. 

A special shoutout to some very important people in our NF journey - Leah Manth, Anne Patterson, John and Linda Manth. We are so blessed to have you in our corner. Thank you for all you do for NF Northeast. The world is a better place because you are all in it. 

Dr. Sara Ghannam, on April 30th, 2021, you went above and beyond for us. Thank you for taking all the time in the world with us that day, to explain and make such a scary time a little less scary.